Can we have a forum for "older" people with bc?
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So glad the site is up. I was about to give up checking.
Climate change continues to do its thing. Over 90 several days already. AC is already humming.
Ken's congestive heart condition is definitely getting worse in spite of MANY medicine changes. He's in denial. Keeps talking about "when he gets better" but he's also decided we shouldn't try to go to Maine. Debbie is trying to juggle her life to come here but she has several challenges.
Primary upped my anti-anxiety meds and I feel I am mainly coping.
Some of you, especially Betrayal, make me tired with all your projects. I did agree to be pres. of our local Niners but generally I can't seem to get out of my own way.
Thanks for being here.
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My brother posted yesterday that when he was in the hospital with COVID he watched FOX, and his blood pressure spiked and his oxygen levels dropped to the 70's. He was also diagnosed with emphysema. They banned him from watching that channel, and he has followed through at home. He also trolls the trolls, just to get the anger out, and had to quit that. I certainly hope this is a lasting about face for him.
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I wish you humor and a twinkle in the eye.
I wish you glory and the strength to bear its burdens.
I wish you sunshine on your path and storms to season your journey.
I wish you peace--in the world in which you live and in the smallest corner
of the heart where truth is kept.
I wish you faith--to help define your living and your life.
More I cannot wish you--except perhaps love--to make all the rest worthwhile.
Robert A. Ward0 -
Taco, I can identify with you. It is hard on a lot of days for me to get started. I keep trying to do things faster ( so as not to sit so long in one spot ) but it seems it is not happening. Well, maybe Spring and better weather will help me organize some "walking" exercises. Just walking around the house here doesn't seem to produce much stamina.
Mary, I do hope your brother is able to stay away from what he knows to be un-conducive to his general health. It is hard when we see things on t.v. Good to stay informed -- but a bit more distance. Here's hoping. I do not watch Fox since they won a lawsuit to lie and do so most of the time. They mostly seem to be a propaganda channel. That is all I will say re: political things
Going to PCP this morning -- with fingers crossed. I do know one item will be somewhat out of bounds --my urine test was not good. This though ( as I mentioned to them ) is I don't think a UTI. We went thru that when first I started needing a Urologist. It is quite likely more bladder cancer clusters and that makes the urine appear as though I have an infection. Like my first trips to the Urologist and after three or 4 bouts of antibiotics ( none of which helped ) I don't have the pain and burning and urgency of a UTI -- feel none of that.
I wish I didn't have to start treatment all over but I think it likely after I have a scope soon enough from now. I go to the Urologist tomorrow. I think he will set up the scope and we will go from there.
I do expect all the rest of my test numbers to be fine -- fingers crossed.
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My fingers are crossed for you, too, Jackie.
Taco, I wish your dh could "get better," as he hopes. Your worries about him touched me since my dh will be 83 in June and we have been married 52 years. We older couples depend on each other so much.
I admire my dh for the way he manages his medical care. He has regular appointments with several physicians. Lately he has been going to the gym more often where he rides an upright bike for cardio and does some strength exercises with weight machines. He has heart disease and circulation problems in his legs. On his own he began wearing high elasticized socks. He stays busy in his workshop making beautiful wooden bowls and grinders that we take to MN and sell at a farmers market. He enjoys the appreciation and the interaction with people. There is probably little profit considering the time he puts in and the expenses of his hobby.
It is foggy today. I will do some daily chores and go to the gym at 11:30 for a senior exercise class.
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Hate how when you log in from a forum when you wish to reply that you get kicked out and have to scroll through to get back. Hope they soon work out all of the kinks since this seems a very slow and tedious process to return to "normal".
Taco, sorry to hear about your husband's health issues and your anxiety. I hope your daughter can clear her calendar to make that trip home. I think denial in men is related to how they perceive their role as family protector and masculinity. My DH has used it for some of his current medical issues and I see it as an attempt to protect his ego from being seen as vulnerable/weak. He's not fooling anyone but it is hard to not see it for what it is. Change has always been hard for him.
Jackie, sorry to hear about the "urine" test results and hope that it is not the bladder cancer again. Please keep us informed since we do care about you.
It is bitter cold here with a return to winter for today but a week of weather that is predicted to give us all 4 seasons in just one week. The poor daffodils are drooping from the cold. I can remember one year where they froze and when my children touched them they were reduced to dust. All are not in bloom yet so I will not be losing more than those that are currently in bloom.
Love today's quote. It speaks to so many levels of life and its challenges.
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Hi, ladies. It took forever to get here. Thanks for the hair treatment ideas. I will try, probably all of them. (not a the same time)
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Update: Sometimes ( despite medical problems ) I am so happy to see my PCP. She is relatively young ( that would be relative to me at age 76 ) but is such a fantastic Dr. I have not mentioned having felt mild depressive feelings over the fact that I've not gotten very far in my rehab. After speaking with Dr. Neeley and she finding I did not yet have cardio rehab going, ( turns out it is likely a good thing ) she took a long look at my numbers and feels like I'm still in an after surgery anemic state and rehab wouldn't even work for me. She also found that like me, the cardio Dr. seems to be somewhat blasé' about issues since he happily referred me right back to her when I voiced my lack of progress issues to him --- basically saying that she put me on certain meds so she can continue to monitor them.
So, before I left her office she took four more vials of blood -- gave me a fecal test and will have tests done for anemia, and stand prepared to order supplemental iron for me. She finds nothing to support at the moment any bleeding anywhere. I'm also back on Lasix and potassium once a day for the next week at which time I will have a phone consultation with her. She is very willing to take over and get me dx-ed and going in the proper direction and helping me get on track to produce red blood cells which I don't have now. She wants me well ( as well as you can be with my circumstances ) knows I'm not there and feels like no one is willingly trying to find what is not right and fixing it. So, back to my being patient -- but I have to say -- it is a relief to me as I was getting to the point I felt some mental instability for not being able to get very far in my healing and re-gaining some of my former abilities. It is easier having found the possible culprit is a medical, fixable one and not due to my laziness and inability to formulate a personal program of needed changes in home rehab.
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I wrote a post and lost it because this mrfdfiotstjo!!! software had logged me out. I will not rewrite it.
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Hoping this post works. Have been lurking--can read posts on my Kindle but not reply as the "new" site does not support my Kindle browser and I share this computer which has been in use to prepare taxes.
Congrats to Betrayal on house progress, finally!
Re the hair discussion, I will never have thick hair. My hair has been baby fine my entire life, thinned while on Tamoxifen but seems to be recovering now that I am no longer taking that.
Jackie, so glad you have an excellent PCP who has your best interests in mind.
Sandy, good luck with your wedding clothes. Reminds me that I need to be planning for our oldest grandson's wedding coming up in May...
We are dealing with going from three cars to one at our house in a one week period. Granddaughter had an accident on a rainy night that totaled her car (she is OK and essentially healed physically but still not feeling comfortable driving again), the next week my husband was waiting to make a left hand turn when someone tried to pass him on the left (against oncoming traffic) and they have filed a claim with our insurance so our not-safe-to-drive car has been sitting at the repair shop for over three weeks while the insurance companies fight it out. Personally, I had a knee injection for a not quite yet bone on bone knee which has provided some relief but am now dealing with facial cellulitis and on an antibiotic with the common gi consequences. To top it off, our younger son is undergoing whole brain radiation for recently discovered multiple tumors in his brain. We are basically hanging in there for the moment.
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I am nearly done with a 122 page reading assignment for a class tomorrow night.
I also have an appointment with another PT-- amounts to a determination whether the problem is serious enough for surgery.
Made some ribbon pins for Ukraine to let people pick up tomorrow night. I was generous with the ribbon. Don't be shy, proclaim it to anyone who sees you.
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Beaver- sorry to hear all that is going on with your family.
Betrayal - nice to hear that there is an end in sight to the repairs.
Jackie - hope you get good news.
Sandy - hope the dresses arrive sooner than later.
I'm on spring break and it is nice to have some time to me! Time to do work in the house and meet a girlfriend for tea. I have my hematologist appointment tomorrow afternoon. I'm expecting the appointment to be boring. My CMP numbers are wonky, but I don't think most of them are so far out of normal limits. I see my medical oncologist on April 8th.
70s today, 50s tomorrow and rain.
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Jackie, so glad to hear that your PCP is picking up the reins and actually to have had the cardio doc 'farm' you out to your PCP. Sounds like there will now be lots of help for what you have been feeling, physically and mentally. It's so nice to have a doctor who really takes the time and is interested in helping you.
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Beavertx, you are dealing with more problems than any person should have to cope with.
Jackie, sorry you're having depression on top of all the medical issues. Understandable.
No fog this morning. The sun is out and we're supposed to get up into the high 70's today. I am playing golf, the first time in several weeks.
I wonder why all the text has shifted to the right side. So far I don't recommend the tech company bc.org used for the redesign.
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They have messed up my signature. I want people to see that the invader was HER2+ but couldn't change it.
It is chilly and windy and cloudy, rain expected to start this afternoon and last until well into tomorrow. Tippy just looked outside and whined.
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Good morning. It is warm and sunny after the fog lifted. I am planning on doing some hiking. We have some great trails, but the weather has to be right and before bugs start biting. Today and Wednesday are good.
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It is always wise to stop wishing for things long enough
to enjoy the fragrance of those now flowering.
Patrice Gifford0 -
Wow !! Most od the written weather reports I have say some sun. Well, we have already had some raindrops and looks really gray in spots in the sky. I'll keep hoping for the sun but carry an umbrella. Thanks for all the well wishes. I've taken my Lasix and potassium for today -- will be going later to the Urologist. I think his intention was to explain his findings from the last fancy urine tests. Then he will likely recommend a time to get his scope preformed. Sigh !!
Have to do it. I will only be allowed the light anesthesia. I should do okay with it.
Nothing much else planned. One excursion out two days in a row is wearing for me. I'll likely come home and have to sit down for a dose. At least it is clear to me why I "need" something like a dose that has almost never worked for me before. I've done it so often that I'm thinking I may never quite quit.
Hope you all have a good day.
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I hate this new and not improved BCO site which continues to have major issues with deleting posts, kicking you out of the forum if you opt to sign in to post, the poor contrast between the print and the glaring background, the overly large left margin and the fact that I just lost a post! I would never hire this company if I owned a business.
Jackie, I was sorry to read of your mental health issues after this surgery related to your inability to resume what you feel is your normal activity level. I am so glad your PCP is willing to resume responsibility for your care. Surgeons like to cut and once that is over they are more than willing to turn your issues over to someone else. So your PCP not only has a plan but an agenda for follow-up which is good. True you were the "energizer bunny" prior to your surgery but your anemia is responsible for your current lack of energy. Once it is resolved you should be able to resume, albeit at a slower pace, your normal activities. If you were to offer advice to a friend who was experiencing what you are, what would it be? Mine to you is, if you require a nap, do so and not regard it as being a negative but a chance to recharge your batteries for what needs to be done next. Focus on what you have accomplished instead of what you'd want to be done.
Bevertx: I am sorry to hear of your recent auto issue, but they can be repaired. I am glad that no one has any injuries from these accidents.
Mary: I loved your new word for describing BCO and wonder what language it is? Is it Klingon, by any chance? LOL.
I have decided after over 2 plus years of house issues and also health issues that I possess "Resilience". I think that all of us on this forum have experienced resilience to some degree to assist us with dealing with BC and its aftermath. If I had to use one word to describe my attributes, I would choose Resilience first (maybe reflects I can be stubborn as well?). I do have days when I circle the drain but then try hard to find some form of distraction so I do not wallow in that down feeling. So my resilience is a form of "I am woman, hear me roar". This has also lead me to be more assertive when I feel that I am being snookered by a physician, contractor, etc. None of us can return to our pre-BC days but we have rebounded to a degree from that and continue to put one foot in front of the other in this new "norm".
It is sunny but bitter cold today. I have a tentative plan to finish some small touchups in the hall bathroom. I welcome the sun after several dreary days. So even if I cannot enjoy the sun's warmth, I can enjoy the energy it provides. I wish all of you a good day.
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I love that none of us would recommend the tech company in charge of this “new” bc org site. Not that anyone asked us! It just made me giggle. Whomever was in charge better not use this project as an example of their work. Near fatal flaws.
I’ve been trying to stop my own pity party of eating everything I wanted whenever I wanted. 62 year old body has added on covid pounds, then toss the inactivity from hamstring surgery pounds too. My big question lately is am I hungry or am I bored. Boredom wins out a lot. So I’ve got to get a handle on that. OK to feel bored, not ok to eat 1/2 a bag of kettle corn due to it.
91 today, tired a record. Might be as hot tomorrow too. Baseball game tomorrow afternoon, always fun even if it’s hot.
Enjoy the day tomorrow (after midnight, so today?)
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Betrayal, that is a great pep talk! You could be an inspirational speaker. I have known Jackie since my first bc year, 2009, and she has offered encouragement to many women who came to this forum. Jackie, we're all pulling for you to regain your health and energy.
I posted a cute meme on Facebook today. It was Snoopy declaring that Lazy is a strong word. He prefers to think in terms of selective participation. I am so lazy compared to my former self when I was busy doing things all day long. I find that I have to formulate a goal and that goal must be accomplished during the morning hours.
There was a time when I played tennis and still got things done. Later I played 18 holes of golf and got things done. Yesterday I played 18 holes, tidied up the kitchen when I got home and rested the remainder of the afternoon. I did cook an easy dinner when it came time to eat dinner.
The old gray mare....
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CindyNY - The company that worked on this project, Work&Company, has put out a press release about how great they did on this project, seemingly with BCO's help and approval. Also, a business magazine called Fast Company wrote a glowing article about what a fantastic job Work&Company did here. It's all on the Work and Company website. Not only do I think it's terrible that they are promoting this as some great success in the business world, but I also hope they do not try to get credit for some sort of charitable contribution here too, since BCO is a non profit.
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My BFF has been dealing with a husband who after knee replacement surgery developed a sudden cognitive decline. Eventually after seeing many physicians (and years invested) in search of a dx, he was finally dx with Lewy Body dementia and Parkinson's. I try to stay in touch by phone but had to work around his care schedule which means missing the opportunity on many a day due to my own schedule. I finally called yesterday only to learn that he had died on Sunday morning. I was speechless at first, then started to cry when she told me that he had been placed on hospice just recently and died peacefully in his sleep. She described how bad the last six months had been with hallucinations, screaming periods, not getting much sleep due to his insomnia and disorientation. Physically he was barely mobile and was a very large guy for her to have to handle 24/7 but she was dead set against using a nursing home after her mother's experience and his, after his knee surgery.
She is a much better person than I am for being as devoted to keeping him at home. On our last call she had described how she had "no life" and how guilty she felt for feeling that way. She was depressed (situational) but did not want to be medicated because she had to remain attentive to his needs. She was glad that his struggle was now over and will miss him dearly since they just celebrated their 48th wedding anniversary in August. She is planning a memorial for him in May and is asking all attendees to wear either a Phillies or an Eagle's shirt since he was a diehard fan of both teams.
He was one of the funniest people who could tell you the same joke over and over and still elicit a belly laugh, he was involved in coaching baseball in the community for decades and was at the point where he was coaching the children of men he had coached as children, and was a very giving person. We will miss him immensely but have so many memories of him that will sustain us and I am sure evoke laughs as we remember certain events. They were more like family than actual family so he leaves a hole that can't be filled.
What makes this so hard is it is the first death in our "generation" and it strikes home. It also reminds me that we need to update our wills and we have no burial plans yet. Hard to contemplate planning for one's own death but we cannot leave these decisions to our children so we need to talk and then make plans
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I'm so happy to be able to read this site again. I do wish I could only see my favorites, as before. I've been dealing with DH, who pretty clearly has dementia. He had a cognitive test yesterday and was clearly in the dementia range. So far his personality has not changed for the worse, which is good. He is incontinent most of the time but doesn't want to wear protection because it's not always the case. I'm definitely trying to change this. Our kids came through like champs. DD & family took out a ton of stuff from DH's study to make room for our bed. The next day DS & family moved the bed downstairs and DH's dresser. So we're now sleeping on the same floor as the bathroom.
The woman giving him the test suggested a steno book where we could write notes to each other. Neither of us has a clue. We're 81 and 82 and have been married 62 years. Without going somewhere, there's not a lot to talk about. I think keeping track of the days is a good idea. When she asked him the date, he was off by the month, year, and day of the week, so prompts are a good idea.
We're still moving somewhere in August, so reading about others' accomplishments around the house is inspiring. The amount of dust in his study was overwhelming and I'm sure some of the other rooms are just as bad. I wasn't able to do much when I was on a walker and things really went to heck.
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Betrayal - I'm so sorry to hear about your friend. Lewey Body is a horrid, horrid disease. My late mother had a related neuro degenerative disease called PSP and it was awful to see such an active woman decline to being bedridden for the last several months of her life. I hope your memories bring you comfort.
Carole - what is your fb name?
Wren - I'm sorry to hear about your DH. Your kids sound amazing. Well done Mom.
Threetree - maybe write the moderators what you wrote above. I wonder if they know what the IT company is putting out there about such a fantastic job. Obviously BCO doesn't think so or they wouldn't have the comments about trying to fix things on the home page.
Stay well and those back east, stay safe and warm.
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Betrayal, maybe this is a good time to step back into your friend's life. Especially since your home is nearly complete in being put back together. It is amazing what we can survive if we see ourselves as having no other choice.
Wren, so nice that you no longer have to negotiate those steps. Last night I tried to take the elevator at church, but it was locked. I ended up walking around the church to take fewer steps-- I don't know which was worse. I have been sleeping poorly lately, too much time on my feet. Cutting way back on physical activity for a bit.
My mother had Alzheimer's during her last two years. It was painful to watch her so carefully tracking the conversation between me and my brother the last time I saw her. She died of a heart attack shortly after moving to a memory care unit. I think the stress of a different environent was too much for her fragile heart.
Carole, yes, we are all getting older. I think it is inevitable. Don't quote me on that.
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three tree - I looked up the Work&Company site online and jotted off an email to their contact listed under press. I let them know it was a full on DEBACLE. I’ll now look online for the magazine that ran what a great job they did, and tell them it’s a LIE. Just ask any of us users.
So sorry to hear of illness and death of friends and family. It’s never easy when our contemporaries pass. I think harder to devote your life to keeping your spouse or partner out of a nursing home, and in effect giving up a part of your life. I can only go from my own experiences with my father. We tried to keep him out of a nursing home but we would have had to take leaves or quit our jobs. He lasted 4 days in a nursing home before passing.
May we all have a peaceful evening.
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CindyNY - I considered doing something similar when I read about all of this too, but as of yet, I haven't. I have not ruled it out though. I think they should know and that it might be a real good thing for them to hear from some of us users.
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Mary, I will always be there for my BFF and appreciate your comment about what we can accomplish when there is no choice. She is the living embodiment of that. We are separated by geography since we live about 90 minutes apart so the phone will most likely be our communication means. She was very involved in her church, the local sports/social club and outreach for the homeless before his illness meant she could no longer leave him. I am sure she will resume her involvement in these groups again once she has finished grieving. Her DS lives with her and WFH so she does have someone available for emergencies. She was hospitalized in an ICU for over a week with sepsis during his illness and downplayed how severe her own condition was until one of the MD's told her that he had discussed her prognosis with her children and recommended they contact a funeral director. I think that message finally hit home since she had neglected her health so she could provide for him and we did discuss what would happen to him if she had died?
I think she opened up to me more recently because she knew I would not criticize. My feeling the other day was that she felt that she could finally honestly verbalize some suppressed feelings without feeling guilt. Her mother lived with them for many years and lived until she was 98. Up until the last 2 years she had been pretty independent, fell at her PCP visit breaking her elbow and required a surgical repair. She was sent to a nursing home for rehab and did not do well (same one her DH had been sent to post knee surgery) so that is why my BFF was so anti-nursing home. So may he rest in peace and may she now have time to realize what will make her feel whole again. I hope to play a part in that.
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So sorry to hear about all the losses (sudden & gradual) folks here are going through. (Didn't say "sisters" because Eric over on the Dinner thread learned his BFF of 37 years was dx'ed with leukemia). My friend who decided to get a mammogram after my initial bc experience (and got a BMX for her DCIS) was just admitted to her local exurban hospital with chest pain--they're going to transfer her to Advocate Christ tomorrow so Bob can take care of her. She's likely staring down the barrel of her third angioplasty. My HK's DH's biopsy results (EGD & colonoscopy) aren't back yet--but he's still having severe abdominal pain and fecal accidents. Two days before Gordy's wedding he has to go into the V.A. to have the PICC line for his dialysis cleaned out. So it's doubtful they'll be able to make the wedding as he'll be in no condition to travel. She is Gordy's "other mom;" we're going to have the videographer set up my iPad to livestream the ceremony.
The saga of The Dress(es) continues. We've settled on that size 12 pantsuit from David's (exchanged from the size 14 "online-only" dress). Yesterday the Holy Clothing dresses arrived--the green size M Ophelia mini fits great; the navy size L Daphne midi (more like a tea length on me) is a little roomy and has too much velvet for warm weather, but still passable (and my HK likes it so she can borrow it whenever she wants). But the green size L Catriona midi? I'm not exactly Dolly Parton, but it is extremely tight in the bust & bodice. However, my HK is not as well-endowed in the "balcony," and it fits her perfectly, so it's hers now.
And today, after we dropped off the pants to be hemmed, the original deep navy blue jacketed dress, but in size 16, arrived today from Dillard's. It fits a bit generously even in normal underwear--which leads me to believe the size 14 from David's must have been an irregular or mislabeled, as it was painfully tight even with a minimizer bra & Spanx camisole. I'm still keeping it for Hospital Black Tie Gala From Hell season--and that deep navy sheer crystal-trimmed jacket matches a pair of Chico's knit pants I have; with a gold or silver knitted lamé tank it gives me more formalwear options.
Had my TSH, Mg & B12 drawn Monday--all normal. (So my constantly feeling chilled is probably due to anemia). My UA was normal too, except for a "trace" each of leukocyte esterase and ketones. But leukocyte count is normal, no bacteria nor UTI symptoms--my primary thinks I was just dehydrated that day. As to ketones, they should actually have been measurable (quantifiable) had I been more diligent about my low-carb diet... but, I'd been noshing the wrong things.
Had my ab MRI & chest X-ray today. Couldn't get the CMP, CBC & LDH drawn today, due to being able to use only one arm for needle sticks. Had I gotten the bloodwork done before the MRI, heaven knows where they'd be able to find a vein to inject the contrast; had I somehow been able to get to the lab afterwards and produce a tappable vein (the one they used for the contrast was turned out to be a "gusher"), the gadolinium contrast would likely have screwed up the blood test values. So I will go to the lab an hour before my melanoma MO appt. tomorrow morning and hope that vein wasn't blown. I don't dare get a draw from my R arm--lymphedema can rear its ugly head even now.
Jackie, hope all goes well with your urology appts. Amazing how finding just the right primary can make all the difference in your care.
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